Futility Policies and the Duty to Die (updated)

I am on the road this week speaking to groups and doing radio interviews. So here is an article published in Voices magazine (a Catholic women’s’ magazine) in 2003 with an update in 2005. In the intervening years, the problems have grown worse but I originally wrote this article when almost no one had heard of futility policies. Here is the article.

When I first saw “Jack” last September (2002), he was lying unconscious in an ICU with a ventilator to help him breathe. It had been two weeks since a truck struck the 60 year-old and his injuries were devastating — including broken bones, blunt-force trauma and a severe head injury.

When Jack’s family contacted me about seeing him, they were desperate. The doctors told them that he would never come out of the coma and the issue of withdrawal of treatment was raised. The wife refused.

As an ICU nurse myself, I could see that some of the staff felt that taking care of Jack was a waste of time. So I was not surprised when the family was soon told that nothing more could be done. But it was shocking when the hospital told the family that Jack’s ventilator was going to be removed regardless of their wishes. The family was given a deadline to find another health facility to take him.

By that time, Jack was opening his eyes and his family thought he could squeeze their hands at times. The medical and nursing staff assured them that this was just a “reflex”.

After some frantic phone calls, Jack was transferred to a long care facility that took patients on ventilators. Soon after the transfer, his condition became critical again and the family insisted he be treated. Jack was transferred to a hospital ICU. When the staff found out I was a nurse, some of them asked me what the family’s rationale was for continuing treatment. It was obvious that they too felt Jack was a hopeless case.

But over time, Jack improved and was finally able to breathe on his own without a ventilator so he was transferred to a regular hospital bed. Eventually it became evident to all that Jack was starting to respond to commands but it took pressure to get rehab services for him.

Just before Thanksgiving — a little more than two months after his accident — Jack became fully awake. He is now in a rehabilitation facility near his home in Illinois where the staff is working to strengthen his arms and legs, which were broken in the accident. Now, no one meeting him would ever guess that he had had a brain injury.

Even doctors and nurses who ordinarily disdain religion often call cases like Jack’s “miracles”. Of course, for many in healthcare, it’s easier to believe in miracles than to accept that they were wrong and a life could have been unnecessarily or prematurely lost.

But while Jack’s story has a happy ending, many similar cases do not. Families often automatically accept or are even pressured into accepting a doctor’s grim prognosis for their loved one and withdraw treatment after a patient’s brain is injured by trauma or other conditions like a stroke. Usually, the patient then dies.

Unfortunately, families like Jack’s who choose to continue treatment despite a “hopeless” prognosis are increasingly being denied that choice because of “futile care” policies being adopted in many hospitals throughout the country.

Futile Care Policies and “Choice”
Most people assume that either they or their families will have the right to decide about medical treatment when they become seriously or critically ill. The biggest problem, people are told, is that they or their loved one will be tethered to a machine forever if they do not sign a “living will” or other health care directive. The “right to die” movement has convinced most people and medical personnel that the ability to refuse treatment is one of the most important aspects of medical care to prevent patients and families from needless suffering. Indeed, poll after poll shows that most people say they would rather die than be a “vegetable”. And many people automatically assume that they would never want their lives prolonged if they had a terminal illness, were paralyzed or senile, etc. Most people assume that refusing treatment, like assisted suicide (the other goal of the “right to die” movement), means choice and control.

But a funny thing happened on the way to this supposed “right to die” nirvana.

Some families and patients did not “get with the program” and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in dysfunctional family relationships. (In contrast, families who agree to withdraw treatment are almost always referred to as “loving” and their motives are spared such scrutiny.)

At a 1994 pediatric ethics conference I attended, one participant was even applauded when he suggested that parents who refused to withdraw treatment from their “vegetative” children were being “cruel” and even “abusive” by not “allowing” their children to die. In some cases, doctors and ethicists have even gone to court to force withdrawal of treatment over a family’s objections. These ethicists and doctors were stunned when judges were often reluctant to overrule the families.

Yet over the years and unknown to most of the public, many ethicists have still refused to concede the choice of a right to live and instead have developed a new theory that doctors cannot be forced to provide “inappropriate” or “futile” care and treatment to patients deemed “hopeless”. This theory has now evolved into “futile care” policies at hospitals in Houston, Des Moines, California and many other areas. Even Catholic hospitals are now becoming involved.

In the July-August 2000 issue of the Catholic Health Association’s magazine Health Progress, Catherine M. Mikus and Reverend Peter Clark — a lawyer and an ethicist — argue that it is “time for a formalized medical futility policy” in Catholic hospitals. Like many such articles in secular ethics journals, the authors refrain from being too specific about what conditions and which patients would be subject to such a policy. The authors concede that even the American Medical Association says that medical futility is a concept that “cannot be meaningfully defined” and is a “subjective judgment” on which there is no widespread agreement.

Mikus and Clark make it clear that they are not talking about treatments that are “harmful, ineffective, or impossible”, the traditional concept of medical futility that, of course, is not ethically obligatory. For example, no doctor would honor a family’s request for a kidney transplant for a person who is imminently dying. Instead, the authors argue for a new definition of futility to overrule patients and/or families on a case-by-case basis based on the doctor’s and/or ethicist’s determination of the “patient’s best interest”. Ironically, the “right to die” movement was founded on the premise that patients and/or families are the best judges of when it is time to die. Now, however, we are being told that doctors and/or ethicists are really the best judges of when we should die. This is reminiscent of the imperious statement attributed to Henry Ford that his Model T customers could “paint it any color, so long as it’s black”. Thus the “right to die” becomes the “duty to die”, with futile care policies offering death as the only “choice”.

But despite the lack of consensus on what constitutes futile care, these Catholic authors are passionate about why such policies should be adopted and insist that their policies are “firmly rooted in the Catholic tradition”:

“Proper stewardship of these resources entails not wasting them on treatments that are futile and inappropriate. They must be rationally allocated; to waste them is ethically irresponsible and morally objectionable”. (Emphasis added)

In other words, a social justice-style argument is being made to save money.

Unfortunately, when it comes to Mikus and Clark’s opinions, not only is a sense of humility lacking but also a sense of God’s jurisdiction:

“In assessing whether a treatment is medically futile, physicians must consider carefully not only the values and goals of the patient/surrogate, but also those of the community, the institution, and society as a whole”. (Emphasis added)

This not only ignores God’s ultimate role in life and death but also turns the Hippocratic oath on its head. While the Hippocratic oath is no longer routinely used with medical students, its enduring legacy has always been the sacredness of the commitment of the doctor to his individual patient. Now, new doctors are often told that their ultimate commitment instead resides with the health and welfare of society.

It is appalling that Catholic doctors are now also being encouraged to adopt the secular and utilitarian concept of the greatest good for the greatest number rather than a spiritual commitment to each individual for whom they care. Under this new standard, Jesus the great Healer must be considered a failure for tenderly concerning Himself with healing such “little” lives during His ministry rather than constructing a more “politically correct” health system.

Where Do We Go from Here?
Just a generation ago, doctors and nurses were ethically prohibited from hastening or causing death. Family disputes and ethically gray situations occurred, but certain actions (such as withdrawing medically assisted food and water from a severely brain-injured but non-dying person) were considered illegitimate no matter who was making the decision.

But with the rise of the modern bioethics movement, life is no longer assumed to have the intrinsic value it once did, and “quality of life” has become the overriding consideration. Over time, the ethical question “what is right?” became “who decides?” — which now has devolved into “what is legally allowed?”

Thus, it is not surprising that the Health Progress article on futility policies is subtitled “Mercy Health System’s Procedures Will Help Free Its Physicians from Legal Concerns”. This is no afterthought, but rather the greatest fear of the authors that families may sue.

Doctors are understandably afraid of civil or malpractice lawsuits. In this article, Mikus and Clark attempt to convince doctors that a written futility policy — no matter how vague — is necessary. Then doctors would use the power of an ethics committee to back up their decisions in any legal proceeding in order to prove that the determination of futility meets the hospital’s standard of care.

Even more ominously, there have been efforts to incorporate futile care policy into state and federal law. For example, Senator Arlen Specter introduced the Health Care Assurance Act of 2001that, while aimed at improving health care for children and the disabled, nevertheless contains a provision that there is no obligation:

“to require that any individual be offered, or to state that any individual may demand, medical treatment which the health care provider does not have available, or which is, under prevailing medical standards, either futile or otherwise not medically indicated”. [Emphasis added.]

The first step in solving a problem is to recognize it. We cannot always rely on a mainstream media that would rather exhaustively cover a star’s shoplifting charge than alert us to thorny ethical problems. Legislation and policies are often developed without public knowledge or comment. Health insurance can no longer be counted on to pay for all needed treatment in many situations.

This is why publications such as Voices and many other Catholic periodicals, pro-life news services and the Internet are so important, especially in the area of ethics. We in the Church are also blessed with encyclicals, Vatican documents and the writings of the doctors of the Church, which give clear principles that are still just as valid and useful as ever in a world of increasing technology and seductive decadence.

If we truly want to protect lives, save souls and fight injustice, we cannot remain silent in the face of an ever-expanding “culture of death”.

Postscript: A couple of years after this was published, Jack was home and doing well when I was contacted by a documentary team from the UK who were making a film about Jack’s experience. I was asked to be a part of this.

I spent a lot of time with the British team and they told me how giving up on someone like Jack would not happen in the UK, despite their government-run National Health Service.